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Mirvaso has been approved by the FDA.

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    peterd
    Junior Member

  • peterd
    replied
    Call me negative rebound patient #35

    Originally posted by Brady Barrows View Post
    Thanks wiry for the link to Cafepharma board which I have added to post #1 in my Mirvaso thread. Also thanks to nat007 for the link to the Dr. Andrea Trowers YouTube on Mirvaso with a few anecdotal reports in the comments under this video. I have added the video to Post #11 and used a few of the reports from actual users so my total now stands at:

    Positive 7
    Negative 34
    Ambiguous 1

    I will admit it is tough call on the positive report #7, Bill Ribara, but the referee is me and I make the call. Even though Bill admits rebound, he continues to use Mirvaso and recommends, and says, "it's well worth it." That makes it positive to me, even though personally, I feel, any medication that results in what Bill describes as, "With mirvaso, I get flushing 3hrs after application-- a tad nasty but is gone within 1hr. If stop using mirvaso altogether I get a week long increased redness that prompts me to wear makeup..." would make me stop using it. What will happen six months down the line, or a year of taking Mirvaso? The long term effects may be worse than you can imagine. Nevertheless, some rosacea sufferers are reporting, like Bill that Mirvaso works for them.

    And I wish my one ambiguous report, jaygee would clarify his position on Mirvaso.
    I got a sample of this last week and used it thinking wow on monday. When it wore off my face was much worse. So I attributed to needing to use a few days to get accustomed. Man what a mistake. I took it for 3 maybe 4 days and finally stopped. My face is like a boiled lobster and where I was mild redness in cheeks and nose and some of my forehead now its hot red everywhere I put it. My new derm was not clear on its use nor did she mention the rebounds. I had to google it and needless to say I stopped using it and the symptoms have abated a bit but its still horrible. I am even peeling in a couple spots. At this point I dont know what to do and am praying it clears up with a little more time. Anyone have suggestions on treating the rebound? I am doing light moisturizing and trying to keep the angry skin down until I can force an appt with this derm that gave me this crap.

    Leave a comment:

  • roasceaclearwannabe
    Senior Member

  • roasceaclearwannabe
    replied
    I live in the UK and after reading the recent Daily Mail newspaper regarding Rosacea (link posted a few pages back on this thread) I am concerned that this drug looks very likely to being licensed in the UK, as the dermatologist running one of the current Mirvaso trials here in the UK is quoted as saying Mirvaso 'appears to be tolerated extremely well'. Part of me is excited about the possibility of getting my hands on this medication here in the UK but the other part of me knows that on the balance of probabilities I am most likely going to have a negative reaction, especially considering I experienced rebound flushing when I applied nasal spray to my skin!

    I just can't understand how this drug can be authorised if it causes such bad reactions and ultimately aggravates Rosacea further! If I do end up getting the drug and I have a bad reaction (don't worry I will only apply it to a very small area) I won't think twice about reporting my side effects to the relevant authorities and refer them to both this board and cafepharma. Whilst I understand that an Internet forum is hardly a scientific controlled study I think there is a lot to be said for the overwhelming amount of negative reports.

    Funnily enough I did nearly sign up for the Mirvaso trials here in the UK, what a good job I didn't in the end! Although it would have been interesting to see how the tests were conducted so I can get a true insight into their accuracy! On the consent form it does have a section relating to side effects but it is very vague stating 'the most frequently observed side effects were flushing, worsening of facial redness, skin warming/burning sensation, skin discomfort, hedache and itching. These reported side effects were mild or moderate in intensity and descreased over usage'.

    Leave a comment:

  • nat007
    Senior Member

  • nat007
    replied
    Yeh that is a frightening development I think too How doctors can prescribe that combo is beyond me (esp. the risky cortisones), but as that derm in the thread you linked us to Wiry states; as long as it works for patients with the added topicals, he sees no legal impediment. Right... I'm sure we'll hear more in the near future from patients who report worsening of their rosacea due to these practices

    Leave a comment:

  • Birdie
    Senior Member

  • Birdie
    replied
    Originally posted by nat007 View Post
    Yeh close call Brady but agree, as long as they keep using Mirvaso and bear the worsening and patch it up with more mirvaso or make up, I guess you can call it a positive. I mean, I stick with the side effects from my meds and hate them but still keep using the meds, so that is a positive too. But if they report hefty rebound, yet are desperate and keep using Mirvaso, perhaps there is a way to make a side note or something?
    Like:
    *Keeps using Mirvaso but reported rebound worsening.
    This will be a very interesting document in the end I think, thanks for keeping track of it all.
    I think the ** footnote idea of Nat's is very good. It clarifies the results even more for potential users.
    Also, good point about having to use meds that have side effects but continue to use. One big difference
    Though from what I'm reading is mirvaso users are adding another " med" to mask their side effects. I
    Take some regular meds, live with the side effects/ don't use another medication to reduce side effect
    Symptoms. Any Derm, Dr., that would recommend the addition of cortisone/ benedryl to the mirvaso mix
    Is not to be trusted. Birdie.

    Leave a comment:

  • nat007
    Senior Member

  • nat007
    replied
    Yeh close call Brady but agree, as long as they keep using Mirvaso and bear the worsening and patch it up with more mirvaso or make up, I guess you can call it a positive. I mean, I stick with the side effects from my meds and hate them but still keep using the meds, so that is a positive too. But if they report hefty rebound, yet are desperate and keep using Mirvaso, perhaps there is a way to make a side note or something?
    Like:
    *Keeps using Mirvaso but reported rebound worsening.
    This will be a very interesting document in the end I think, thanks for keeping track of it all.

    Leave a comment:

  • Brady Barrows
    Senior Member

  • Brady Barrows
    replied
    Thanks wiry for the link to Cafepharma board which I have added to post #1 in my Mirvaso thread. Also thanks to nat007 for the link to the Dr. Andrea Trowers YouTube on Mirvaso with a few anecdotal reports in the comments under this video. I have added the video to Post #11 and used a few of the reports from actual users so my total now stands at:

    Positive 7
    Negative 34
    Ambiguous 1

    I will admit it is tough call on the positive report #7, Bill Ribara, but the referee is me and I make the call. Even though Bill admits rebound, he continues to use Mirvaso and recommends, and says, "it's well worth it." That makes it positive to me, even though personally, I feel, any medication that results in what Bill describes as, "With mirvaso, I get flushing 3hrs after application-- a tad nasty but is gone within 1hr. If stop using mirvaso altogether I get a week long increased redness that prompts me to wear makeup..." would make me stop using it. What will happen six months down the line, or a year of taking Mirvaso? The long term effects may be worse than you can imagine. Nevertheless, some rosacea sufferers are reporting, like Bill that Mirvaso works for them.

    And I wish my one ambiguous report, jaygee would clarify his position on Mirvaso.
    Brady Barrows
    Senior Member
    Last edited by Brady Barrows; 30 November 2013, 11:20 PM.

    Leave a comment:

  • nat007
    Senior Member

  • nat007
    replied
    True.

    Brady, below this Mirvaso video on youtube are quite some user reviews, and a lot of them are negative and reported bad rebound worsening. Maybe they are of any worth for your inventory?

    http://www.youtube.com/watch?v=5O2ACrHtikQ

    Leave a comment:

  • wiry
    Senior Member

  • wiry
    replied
    Well...$$$ makes the world go round.

    When if comes to health, you have to be responsible for yourself. Part of that responsibility is to research the drugs you use. Thankfully there are people to help and a medium for them to voice their concerns. Is is very scary that reps are suggesting to cut it with something. This is a desperate attempt to keep the $$$ flowing.

    We will just have to wait to see what the long term future of Mirvaso is.

    Leave a comment:

  • nat007
    Senior Member

  • nat007
    replied
    Originally posted by wiry View Post
    Yeah, I saw a lot of bad comments about Galderma there. But that may be a place to complain about the company in general so take that into consideration.

    But where things change is when you start hearing from the reps who say the docs are having real issues with it. The docs should be seeing a general sampling of the population.

    Sooo...if Mirvaso really did that well in the trials (i.e. data was truly unbias)....then whey the need to cut with something??? Sure, I could see that maybe for some special cases (the claimed 10% that reacted poorly) that they would try to create something to counteract it. But at this stage, there should be no need to be desperate if the results were as Galderma claimed. It seems like to even they are trying to find their own solutions to something that does not work on its own.

    Well...good luck with that. You can't add steroids or others things to further suppress the rebound. Well, you can (and some do I am sure), but this will make the patient worse long term. All of us here know that (even if some doctors do not).

    Maybe it could be used for special occasions, but for anything beyond that, you are risking long term damage...just like steroids and nasal sprays.

    Yep, I think you are right. Lets hope there will be a miraculous storm of positive reports soon, but I seriously doubt it. What makes me most annoyed is that it seems all about good sales numbers, and that neither the reps nor the dermatologists they are referring at (and one derm even chimes into the discussion and says he has no ethical problems with suggesting his patients to add lotions and potions to the mirvaso, as long as they get the desired results), seem to be worried or even slightly bothered about the potential bad effects of having rosacea patients urging to use cortisone cream. Simply because the Mirvaso on its own is not working and causing bad worsening of symptoms. (How is that even possible when its such a fantastic product, as all the test results initially showed?) So their aim is to find a way to make patients buy Mirvaso, either one way or the other, if needed with strong immune suppressive and potential highly damaging medication as (hydro)cortisone. How come they don't know that rosaceans should stay well clear of cortisones?? How come it seems their only aim is to sell this Mirvaso, left right or center? How come there is no organization, no FDA, no protective patient organization who picks up on this and sends out an official warning? What if future patients develop more severe rosacea because they trust their derms and trusting start using the cortisone + mirvaso, only to end up worse? As usual, there is no one then to fix the problem that was knowingly (or which should have been predicted) caused. Sigh...

    Leave a comment:

  • wiry
    Senior Member

  • wiry
    replied
    Yeah, I saw a lot of bad comments about Galderma there. But that may be a place to complain about the company in general so take that into consideration.

    But where things change is when you start hearing from the reps who say the docs are having real issues with it. The docs should be seeing a general sampling of the population.

    Sooo...if Mirvaso really did that well in the trials (i.e. data was truly unbias)....then whey the need to cut with something??? Sure, I could see that maybe for some special cases (the claimed 10% that reacted poorly) that they would try to create something to counteract it. But at this stage, there should be no need to be desperate if the results were as Galderma claimed. It seems like to even they are trying to find their own solutions to something that does not work on its own.

    Well...good luck with that. You can't add steroids or others things to further suppress the rebound. Well, you can (and some do I am sure), but this will make the patient worse long term. All of us here know that (even if some doctors do not).

    Maybe it could be used for special occasions, but for anything beyond that, you are risking long term damage...just like steroids and nasal sprays.

    Leave a comment:

  • nat007
    Senior Member

  • nat007
    replied
    Thanks Wiry, a VERY interesting and worrying thread to say the least. Not sure if I read this correct, but it sounds like one of the Galderma boys wrote this reply as well there:

    'Old 10-31-2013, 01:39 PM
    Anonymous
    Posts: n/a
    Default Re: Mirvaso
    I hate this place, but all this slamming Mirvaso is just nonsense posted by other company's people.
    my docs say one of ten patients (at most) are reporting any side-effects worth even mentioning. that's better than almost any product in any therapy.
    All this rebound stuff is nonsense. It's a daily use product. You return to your original redness. It doesn't cure rosacea (nothing does), so if you engage in all your triggers while enjoying the effects of mirvaso, yes you might be redder than you were before that days treatment when it wears off AFTER 8 to 12 HOURS. That is NOT NOT NOT rebound!!!
    Get a life - if you spent less time slamming us on here, you might have a better job than you do."

    Creepy stuff. I guess thats how the truth gets bend by 'professionals'..


    And then this one:
    " Default Re: Mirvaso Quote:
    Originally Posted by Anonymous View Post
    Are you kidding?!?!? Have you not talked to any of these patients, seen pictures, or talked with an md with experience with a patient that has had this happen?!???! You cannot be this naive/ignorant/stupid/lame/corporate and still employed... Honestly. Wait... It's Galderma... We promoted curly et al.

    You forgot to sign your post. let me help you out
    -Signed, a finacea rep."


    Corporate, uncaring boys, unable to take any criticism and making it all in a competition thing? And these are the guys pitching this product to dermatologists guys.. think about it.

    Oh and this as a last one:
    "Proof positive Galderma and their stupid management will promote off label when a product is not successful or has shortcomings. I think this is a serious and can result in serious consequences from the FDA. They seem be doing the same things with the launch of Mirvaso.
    Very unethical branded generic company with obviously questionable sales and marketing leadership of late. I thought just a few years ago Galderma was a good and well respected company. How could you guys have fallen so far so fast?
    You guys should be proud."

    So thats how it goes behind closed doors? And we are still supposed to trust all the pristine good intentions and truthfulness from (reps from) Galderma? Our haven in bleak times when it comes to rosacea treatments? They were tipped about the rebound before Mirvaso was launched and they ignored it , simple as that,
    nat007
    Senior Member
    Last edited by nat007; 30 November 2013, 07:43 PM.

    Leave a comment:

  • wiry
    Senior Member

  • wiry
    replied
    Comments from Galderma Sales Reps

    http://www.cafepharma.com/boards/sho...d.php?t=538135

    Recent comments:

    --- "Yup, numbers are down for yet another week. Let me guess? It's the sales forces fault. They don't handle the rebound question correctly. Cant possibly be fault of anyone in TX."

    --- "My biggest writer said she had to stop writing mirvaso because of the rebound. I'm so tired of hearing this. Everyone says they're having to tell their docs to cut it with cream... but what kind of cream? Hydrocortizone? Bionect? Benedryl?

    The truth is, there's an appropriate place to use it... and that's for extremely severe rosacea that can't handle anything else. If you're selling it any other way, you're not being truthful with your docs. Be the best rep you can be, don't be a used car salesman who is trying to get the beat up Pinto off his lot. Even if we all go down with this drug, I'm doing down with my dignity and my reputation.
    Reply With Quote"

    ---"Actually, I've heard from my derms that they're telling patients to mix Mirvaso with 1% hydrocortisone and/or benedryl and a lot of patients who previously had problems are now doing fine. Obviously, I'm not the one telling them to do this."

    This mimics users experience. There is probably just one reality if you ask me. The last comment is scary. It sounds like the docs who are prescribing this may be the of the variety that do not understand/care to really learn about rosacea. Hydrocortisone? Hopefully they are saying to only use it for special occasions then. C'mon...if this was really working, why does everything we know from real people point in the opposite direction. The guys who make money off the drug say one thing. The guys who actually use it say another.

    Leave a comment:

  • nat007
    Senior Member

  • nat007
    replied
    Originally posted by David Pascoe View Post
    Whilst this reply is unsatisfying, I can at least sympathise because the published trial data is so different to what we have seen reported online that there is some investigating required to find out why.
    Yeh for sure David.. Its such a huge discrepancy that I also wonder what is really going on. I guess it takes a lot more time to find out if the published trials were accurate and there is just a disproportionate large group of bad responders here online, or if the trial outcomes were perhaps colored and misrepresenting things.

    Leave a comment:

  • David Pascoe
    Site Owner

  • David Pascoe
    replied
    Originally posted by nat007 View Post
    I asked my derm about Mirvaso again and this is his reply:

    `Mirvaso is interesting. I think you tried the brimonidine eye drop on the skin N.., and this did cause severe rebound. I have looked through all the trial data and spoken to the American investigators and they all confirmed that no rebound occurred – so not sure what to make of these reports.´
    Whilst this reply is unsatisfying, I can at least sympathise because the published trial data is so different to what we have seen reported online that there is some investigating required to find out why.

    Leave a comment:

  • nat007
    Senior Member

  • nat007
    replied
    I asked my derm about Mirvaso again and this is his reply:

    `Mirvaso is interesting. I think you tried the brimonidine eye drop on the skin N.., and this did cause severe rebound. I have looked through all the trial data and spoken to the American investigators and they all confirmed that no rebound occurred – so not sure what to make of these reports.´

    Leave a comment:

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